The best laid plans...

I was all excited to join Joan's chat room yesterday when alas, I was incapacitated by horrific cramps. Go figure... Actually the trouble started shortly after I posted on Wednesday. I felt fine and then at about 2:10 (10 minutes before the end of the day) I started to feel awful. First came the eye strain and headache, then the skull pain and nausea. I took ibuprofin stat but relief did not seem to be in the cards. I napped and still I felt bad. The next morning I awoke nauseated and my headache still hadn't let up. It lasted the whole time I was at work on Thursday. Luckily I was able to cut out a few minutes early to come home and rest before I taught yoga. The rest helped a lot and I felt fine until after teaching. Then the discomfort started again.

Now is the part where I mention that this happens to me every month to varying degrees. The time around my period is very rough. I actually think that whatever happens to me hormonally at this times causes a symptom flare up. I feel like I get inflamed. My joints tend to swell and ache. The numbness in my appendages becomes more pronounced and prolonged. My mood drops and I swear I can feel my brain swelling. Can that really happen? Anyway, my brain starts to feel like it's bulging against my skull and all kinds of other unlovely side effects seem to occur. My vision and balance seem to suffer some and for a few days I usually feel sick most of the time.

This is around the time the cramps start. For a while acupuncture eased these but I have not been going and the cramps are getting worse again. They kept me up on Thurssday night, left me white knuckled during a meeting yesterday and caused me to let out several exclamations in front of my husband last night. I was sort of embarassed to let on but little yelps kept escaping me when they became bad.

Several weeks ago I had planned to go to a job fair today to fine-tune my interview skills in case I wanted to seek advancement for next year but when I awoke the first time this morning, I was doubled over with cramps. I tried to wait it out but they just got worse and the nausea returned. I finally gave in to my body and decided to skip the fair and stay in bed. I didn't get up until almost noon. Overall, I slept about 14 hours and once again that was the charm. I feel a lot better now. Tonight and tomorrow I will also try to get plenty of sleep and hopefully by Monday I'll be back to feeling good again.

Lately it seems like things have been working out for me one way or another although not always as expected. Something tells me I was not really meant to go to the job fair after all. Recently I have been thinking that I need to just work out a great plan for next year with my current district because I have tenure and job security. I think I am on the right track with this thinking given the current economic state and my MS. Perhaps there is something wonderful awaiting me...

Today I am thankful that I can look with peace upon the unexpected and find a silver lining to this change in my plans.

Buried Alive

Some of my readers may have noticed that I have not been posting or reading your blogs of late. This is not for lack of love. I have been so busy that I am actually writing this post from my desk at work as my students complete a final exam. I have actually been trying to write this for a few hours but there are professional responsibilities to attend to (LOL).

Life is good at the moment. I have the random daily symptom, a reminder of the MS but nothing to stop me in my tracks.

I am now teaching yoga at a studio twice a week and so far it's going well. Other than that, I'm keeping busy with work. The term ends tomorrow so things should slow down for Friday (a teacher workday). I am going to offer a free yoga class to other teachers that day so they can destress.

Today I am thankful that I have been able to keep up with my personal and professional commitments.

Yoga and MS: Part 2

I remember the day I was diagnosed in rather a blur. Two days before, I had been hospitalized after spending hours vomiting blood because of a Mallory Weiss Tear in my esophagus. Fortunately, much of that event still remains a blur. I do know that I spent the night in the ER and that I was released the next day once they determined that my internal bleeding had stopped. The night of my release I got my first brain MRI. The next day at 2:00 p.m. my doctor called to give me my diagnoses. His news barely registered but I remember thinking, “Will I still be able to walk?”

After several moments, my husband actually articulated the real question on my mind. “Can she still become a yoga teacher?” My doctor assured us that I could. While I reeled with the news of my diagnoses and tried to process what my doctor was saying, I reassured myself by thinking that I still had about six weeks to get healthy for yoga teacher training. Ironically, when we left for Kaiser to have tests run, I could not even walk without support. At the office, I gratefully allowed myself to be wheeled in.

Even after four days on 500mg of Prednisone a day, I could barely walk. I staggered from couch and bed to bathroom and back to couch and bed, clinging to the walls for support or crawling along the floor. I had never been so sick but still I dreamed about doing yoga. It was several weeks before I could get into any poses.

Asana (physical poses) have always come easily to me. Try as I might, I never could master the yogic breath though. It was only when I began to deal with the pain locking my entire body that the breath began to come. One night, I went to bed and found my body so tight and my vertigo so intense that I wanted to scream. Rather than screaming, I started breathing deeply through my nose like I had practiced in yoga. As I breathed, the pain began to lessen and my muscles relaxed slightly. Each breath brought more relief. I kept breathing, keeping my eyes open to orient myself in space. Finally, I forced myself to move around in bed and breathe into the vertigo.

For hours I breathed, moved and prayed, rubbing my aching limbs at every turn. At the end of two hours the vertigo was gone and most of the pain. During the night I healed. It was probably the steroids that finally brought me back towards health, but it was the yoga that brought me into the light.

To be continued... To read Part 1 click here.

Today I am thankful for my yoga practice.

Stuart's MS Views and News

Hello loyal readers and people with MS:
Check out the letter below from MS Views and News. I have long been a loyal follower of this site and this newsletter and I wanted to help spread the word so be sure to read this letter and get yourself signed up. All the cool kids are doing it, you know you want to :)
Thanks,
Nadja

From: MS Views and News, Inc.

Almost everybody, seems to know somebody with Multiple Sclerosis. Maybe a family member, a friend or a business associate or colleague.

If so, please provide the following information to them so that they ( the MS patient) and/or their caregivers can remain up-to-date with MS related News.

"Stu's Views and MS Related News", a weekly MS related e-Newsletter is currently being globally viewed by over 4000 email recipients who want to know more of Multiple Sclerosis and want to be kept abreast of all news worthy items concerning this disease.

To register, if not yet receiving this weekly e-newsletter, please click here.
After registering, take a look at our website, MS Views and Related News and our MS blog.
MS Facts are available to read on our website in more than (11) different languages.
To locate these other languages, find and click the link for web resources.

If you have any questions pertaining to MS, that you cannot find on our pages, send me an email to: stuartschlossman@bellsouth.net

Thank you for allowing me to "Help to make a Difference"...

Guest Post on Conquer MS

Please check out my guest post on Conquer MS by clicking here. This article tells a little about my experience with acupuncture. The first half appeared on this blog.

On another note... Will the real Denver Refashionista please stand up? Some days you will find me the poster child for inspiration with MS, at other times you may find me downright nuts or depressed. Please click here to read the note to my readers I wrote when I first started this blog and I think all will be explained. I write because it helps me sort things out. My content is generally uncensored and at times, the emotion is very raw. Look at each piece as a snapshot of me in time and all will become clear. I appreciate your continued readership, thoughtful comments and support.

Last but not least... Today I am grateful because I was just hired as a yoga teacher to teach my own class weekly instead of just subbing. Go me!

One can't live on introspection alone

MS has forced me to look at myself, my lifestyle and my choices in a deep way. This process has been both challenging and uncomfortable but it has also been good. I am continually forced to examine why I'm troubled when I am troubled. I see others through new eyes and find that my compassion has increased. On the other hand, I have left little compassion for myself.

All around, I fault myself for every bit of absentmindedness I exhibit, everything I can't do and every commitment I flake out on. Despite being human and having MS to boot, I beat myself up constantly. Lately, my overall frame of mind has been better but my tolerance for my own shortcomings seems to be decreasing. In order to feel good inside, I try to keep busy. I follow a checklist of things I need to do and I feel the best when I can check things off this list. Unfortunately, I am wearing this prop out quickly.

I find myself asking, "What else is there? What and who am I without the things I do?" I went and saw my MS therapist today and she pointed out that I cannot just will myself into control of everything. She said I was taking too much of this process upon myself. She asked me why it was so important to make everyone else think that I am ok. I could only answer that I do not want to be a burden. I also think that when I can convince myself that things are ok that I can maintain the life I have now, that things will remain ok.

My last therapist helped me build a "toolkit." A toolkit for coping is essential but it is also really about maintenance. I think I am ready to move beyond maintenance. The problem is that I don't know where to start. Do I join a group, find a new therapist, continue to introspect? While I recognize my comforting mechanisms, I have not found a way to cut myself free. I still need to feel in control, I still need to check things off a list to feel in control and I am still haunted by the need to feel that this life, my life, has a purpose. I know I can't change in a day or probably that I cannot even do this alone, and yet I long to be able to solve these problems without committing to therapy, finding a group or changing my life style.

Physically I am one of the most flexible people I know but mentally I have created a giant rut. Go figure. There are a million reasons why I should not dwell or feel sorry for myself and yet there it is. I have not forgotten that I have many reasons to be grateful but I am realizing that I have a long way to go in adjusting to both my disease and more importantly, the things in myself that are holding me back from relaxing or feeling lasting happiness. Today I am grateful that I am still spoiled enough to find that these are my chief complaints and that overall it is a good life, we just all have our own stuff to deal with.

Yoga and MS: Part 1

Since I first started this blog readers have been asking me periodically if yoga helps my MS. In a word, "Yes." Today I bought a book called Yoga and Multiple Sclerosis: A Journey to Health and Healing by Loren M. Fishman and Eric L. Small. According to this book, "Gentle, low-impact yoga is the perfect exercise for people living with multiple sclerosis." Luckily for me, I already sensed this and have been relying on yoga for health and sanity since my diagnosis. I am excited to read and study this book so I can write and do more to help others with MS access yoga. The great news is that there is a video available from the NMSS, Southern California Chapter. The video is entitled Yoga with Eric Small: Adapted for People with Multiple Sclerosis and Other Disabilities. At this juncture, I have little further information to offer except my own experiences and those I begin to detail below.

I first started yoga almost four years ago during my first year as a classroom teacher. Several things brought me to the mat the first time. Work was stressful and I needed an outlet. I wanted to renew my flexibility. I was out of shape and above my ideal weight and I wanted to feel better about my body. Deep down, I think I was also hungering for a place where I could slow my mind and calm my anxieties.

I took my first class with one of the owners of a local studio called Core Power (now the largest yoga franchise around). The yoga at Core Power is not for the faint-hearted. Most of the people who attend the studio where I took my first class have rock hard bodies and little fat. I imagine that for most of these people, yoga is not their sole form of excercise. The classes generally involve a brisk vinyasa workout(flowing from pose to pose)and the majority of the classes are heated. My first class fit this model and I was terrified of the heat. At the time, I had yet to be diagnosed with MS but I had always struggled when I was hot. Despite the heat, I made it through my first class. Near the end of the practice we did a pose called "Camel", made by standing on the knees and arching your upper torso backward while your hands rest on your lower back or reach for your feet. This pose exposes our heart and soft underbelly and it can bring up a lot of emotion and intense physical sensations. When I did my first camel, I had no idea about the potential e/affects of the pose. As I arched back I felt like I was going to vomit. When I pulled out of the pose and sat down (light-headed and dizzy) I knew I was going to keep coming back to yoga for a long time. A week later I brought my husband and he also became hooked.

I was initially drawn to yoga because of the physical challenge. I liked the feeling of power and strength I got in the tough, Core Power classes. Within about a month, I shed 10 pounds. I liked the way I looked and the way I felt. As I practiced more, I found something else too-- The way we were encouraged to breath in yoga calmed me. I also found that I was able to meditate as I moved through the asana (physical) practice. It was easier to stay centered and focused on the present when I was immersed in the yoga. This was especially true during a hard practice but over time, I found I could do it during the mellower moments in class as well. Yoga became my sanity. I knew within about three months of starting to practice that I wanted to become a yoga teacher.

I spent 3-5 days a week at the yoga studio for about 3 years. We even went on our honeymoon to a place called "Yoga Oasis" in Hawaii. The whole time I sensed that yoga was improving my life. I felt calmer, happier and a little more slowed down. It was not until I got really sick that I fully experienced the benefit of my yoga practice.

To be continued...

Today I am thankful to be able to teach and practice yoga regularily.

The anger stage

I wonder if anyone ever truly gets over the anger stage? Those who have been following my blog know that things have been getting a lot better for me lately but I still experience regular fits of anger around my disease. The thing that has been making me the angriest lately is the physical discomfort associated with chronic illness. I feel so much better mentally that I want to do a variety of things and I get really frustrated when my health stops me in my tracks.

It seems for every amount of energy I expend, I need as much down time, sleep or rest to counteract it. For some activities I need more. When I attend an hour of yoga, I need at least two hours of nap after to restore my energy. It seems the moment I am fatigued, other problems start to kick in. Lately, not a day goes by where I don't feel ill at some juncture. Sometimes I'm nauseated, sometimes I have skull pain, sometimes my eyes won't focus right and often my body feels downright lousy. Is this the rest of my life?

Why do I feel so icky? Discomfort has become such a major part of my life that for the most part I ignore it and go on with my activities now. I try not to complain too much. On the other hand, I am almost embarassed that when someone asks how I have been feeling that I am compelled to reply, "Not so great."

Tomorrow I am going to a group called MS 101 and I am hoping that talking to others will alleviate some of my concerns. Somehow I thought that between relapses I would feel fine. I also thought that once I got the mental piece controlled that the physical piece would follow. I do spend less time in bed but I still feel cruddy while I'm going about my day. I just don't get it.

Today I am grateful that I can keep on keeping on in the face of challenge.

MS Study

I just received an email from MediciGlobal asking if I would post the info below on my blog. I am in no way condoing or supporting this study but

A Clinical Research Study Evaluating An Investigational Medication for Relapsing Forms of Multiple Sclerosis

Medical researchers are enrolling people in a worldwide clinical research study for people with relapsing forms of multiple sclerosis (RMS). This study will assess the safety and effectiveness of an investigational study medication versus placebo (an inactive substance which contains no active medication) in people ages 18-55 years old with RMS.



The investigational medication used in this study is called teriflunomide (ter-i-flün-ō-mïde). It is derived from leflunomide (le-flü-nō-mïde), also known as Arava®. Arava® is already approved in many countries for the treatment of rheumatoid arthritis, another autoimmune disease.



The first step in determining eligibility for this study is to take the pre-screening questionnaire either online or on the phone. You will be asked a series of questions related to your health and be given additional information about study site locations. Visit www.tower3.msstudies.com or call 1-866-565-0246 today to learn more about the study and see if you may qualify.

Too busy to wallow

An hour ago I was fast asleep again after a long day at work. When I woke up I felt rather crappy (numbness in the hands and feet, aching joints, a slight feeling of nausea). I had to drag myself out of bed. As I did so, I promised myself some self-indulgent post about the daily drag of my disease but then I checked my email. I found that I was being offered three more chances to teach yoga in the next week and a half. I did seriously think about declining (I have not been feeling great) but I reflected that in keeping with my decision to "Live!" I would go ahead and teach the classes.

Sometimes I still get pissed off about the daily symptom parade. On the other hand, I have been learning how to cope. The best thing for me is rest but I am also learning that even on most really rough days, I can push through and take care of business. Yeah, feeling good while I did things would be nice but doing things is still proving valuable, even when things are hard.

Today I am thankful that I can still do most of the things I want to do. No time to wallow...

Lazy afternoon

I had intended to spend a bunch of time on the blog today. I had intended to read a bunch of blogs too. Alas, it wasn't in my cards. In yoga today the teacher said, "Trust your decisions." I guess I will have to trust my decision to sleep away the afternoon... Lately I have been doing a lot more and excercising a bit more too. I think it caught up with me this weekend because right now I'm fried.

I have been having many interesting thoughts lately and some good ideas for blog entries but I'll leave all that for another day and take my rest now so I can have a good week.

Comfortable in my skin

There was a time-- It's been a few months now-- but there was a time where I questioned whether life was even worth living. Somehow I had let myself be swallowed by my grief and my disease. The future looked dark to me. It looked so dark that there were days where I could not even get myself to remember why last April I fought so hard to live. During this time, I kept telling myself, "Everything you need for a beautiful life is already inside of you," and yet I could not find a way to believe. I was reading Stephen Cope's "Yoga and the Quest for the True Self" and realizing that I no longer had any idea who I was or why I mattered at all. Those were truly hard times because I had entirely lost my sense of self.

Times since then have been hard too but not as hard. Something started to shift in December but life was still a struggle a lot of the time. It seemed the more I sought, the less I knew. When the new year arrived I was fixated on finding contentment. I was also fixated on the idea that I should already have things figured out, that I should be feeling a lot better than I did. While I worked hard at feeling better, it seemed that little shifted. It was only when I gave myself permission to snap out of a bad frame of mind, that I finally started to feel better.

It seems the more I did not allow myself to wallow in negative states, the better I felt. Suddenly, about a week or two ago, it occured to me, "I know who I am again." It was as though I had to quit searching in order to remember. I thought that maybe I never knew who I was but now I realize that despite the many ways I have changed, I know exactly who I am. It has been a really long time since I could say that I felt comfortable in my own skin but today I realized it.

Twice this week, I have found myself filled with unexplainable joy. I keep finding myself singing. I am grateful for this newfound comfort.

Good things have been happening to me lately too. I got an almost perfect score on my evaluation at work. I actually felt like my score was too high but my boss said I earned it. In the spirit of that sentiment, I feel a renewed urge to do an excellent job. My review did not make me feel like I could be complacent, rather, it lit a fire under me to be worthy of what the document said about me.

I also got a great compliment today on my yoga teaching. I subbed for a class yesterday and one of my students actually took the time to email the owner of the studio about how much she loved my class. Her email means so much to me. Yoga is one of my passions and I love to teach yoga and spark that passion in others.

In the past both my evaluation and my review would just have been another form of external validation. I used to need so many external reminders that I was achieving something. Now this all means something entirely different. I have found myself again and so the best of me is shining forth. Today I am grateful to know myself again.

Extra, Extra MS Therapist "Gets It"

Denver, Colorado 6:30 pm. After a visit with a local therapist affiliated with the Rocky Mountain MS Society, this writer is pleased to announce that her therapist really "gets it." During a one hour session, this MSer's perspective was repeatedly validated.

It was refreshing to meet with someone who does not have MS who has a deep grasp of some of the issues those with MS often experience. Some of the therapist's most noteworthy comments included, "The medical community often ignores the mental aspects associated with MS." She also noted that, "MS should not be diagnosed over the phone." She compared having MS to "post traumatic stress." This local therapist clearly recognizes the daily struggles and fears confronted by many MSers. Not only did she acknowledge the trauma associated with MS, she directly confronted the issues around control that often plague MSers. She commented that "One of the hardest parts of life can be feeling like one has no control." She went on to mention that for those with MS, this is often compounded by the stress of unpredictable physical symptoms. She also stated that when an MSer gets the physical aspects of the disease under control, sometimes the toughest mental times begin.

Today's session ended with the scheduling of another session in two weeks. This writer will be sure to post an update at that time. Gratefully signing off--